Finding the Right Time to Discuss Advance Care Planning with Myeloma Patients and Their Carers: An Opportunity for Nursing.

Abstract

Purpose: People with multiple myeloma are living longer with an incurable disease due to improved treatments. Despite advance care planning (ACP) and palliative care's focus on improving symptom management and quality of life, there remains a perception among patients and clinicians that palliative care is only for end-of-life care, leading to uncertainty around when to introduce these conversations. This study examines the lived experiences of myeloma patients and their carers, exploring their views as to when and how they would like to commence meaningful conversations around palliative and end-of-life care.

Methods: Semistructured online interviews were conducted with multiple myeloma patients and their carers (N = 15). Verbatim transcriptions were analyzed using inductive thematic analysis.

Results: From 10 patient and 5 carer interviews, three themes were identified: responsibility, receptivity, and resources. ACP had either not been discussed or would not have been discussed had the patient or carer themself not initiated the discussion. Responsibility for initiating ACP conversations rested with both health care professionals and patients. There was no one, "right time" to do this, though diagnosis should be avoided. Conversations depended on resources, whether human, organizational, community, or charities, to facilitate effective ACP.

Conclusions: ACP conversations with myeloma patients are often delayed. Patients and carers believe it is the responsibility of health care professionals to initiate them at the right time. A period of adjustment is required after diagnosis, but there is no single "right time," reflecting the heterogeneity of individual needs.

Implications for nursing practice: Nurses across all settings should be open and receptive to ACP conversations at all points along the myeloma trajectory. Nurses should normalize the initiation of ACP conversations early in the disease trajectory to promote, and remove barriers to, integrated palliative care. Hematology nurses should work collaboratively with palliative care nurses to support early symptom management for myeloma patients.